An Endless Fight for Essential Benefits

When I made the choice to live on a ventilator in 1997, I had no idea how many times I would have to fight for the private duty nursing (PDN) that makes it feasible for me to safely stay at home with my husband and young son.

Once I became vent-dependent, my doctor prescribed 12 hours a day of nursing care. But TennCare, Tennessee’s Medicaid program, repeatedly refused to provide my PDN, on the grounds that it was not a covered benefit.

We sought help from the Tennessee Justice Center. Our lawyer argued that Tennessee had not followed the Grier Consent Decree, which lays out guidelines the state must follow for denials and appeals. We hadn’t been properly notified of the initial denial nor told how to appeal. In addition, by categorically stating that PDN was not a covered benefit, TennCare showed it had neither considered my individual case nor based its decision on anything in my medical record. In May 1998, the state reversed the denials and determined that PDN was medically necessary for me.

Victory! Yet PDN continued to be a volatile issue. Later in 1998, the state proposed limiting home health visits to a total of 125 a year. The question of just what constituted a “visit” was troubling for someone receiving PDN in 12-hour shifts. If this proposal carried, many people would be forced into nursing homes.

I wrote down my thoughts on my Liberator communication device and testified, with others, before a legislative committee in 2000. Thankfully, the proposed changes did not go into effect. I could breathe easy for a while.

But not for long. Near the end of 2002, our PDN was threatened again. The state seemed determined to warehouse its most vulnerable citizens in nursing homes.

Desperate times called for desperate measures. My husband, son and I attended the Christmas Open House at the Governor’s Mansion, hoping to speak with Gov. Don Sundquist. He wasn’t there, but we gave the First Lady’s secretary a picture I’d made, along with a letter I wrote about the issue. But Sundquist’s term was ending. He hadn’t been a friend to the disability community while in office and did nothing to help us as he left.

Enter Gov. Phil Bredesen — a man who made his fortune in health care and who ran on the promise that he alone could reform TennCare. We didn’t know his idea of reform meant cutting 323,000 people from the rolls and reducing the benefits for another 396,000. One of those benefits was PDN.

This was the most serious threat yet, because Bredesen had obtained federal approval to proceed with the cuts. We received a letter saying we would lose our PDN on Aug. 1, 2005.

Once again, we didn’t sit back and wait for the axe to fall. We joined with hundreds of other protesters to put pressure on the governor. I spoke (via Liberator) at a prayer vigil, wrote letters to the editor and state and federal legislators, and attended vigils on the steps of the Capitol.

We’ve now been told that PDN will not be cut for ventilator-dependent enrollees, and the whole issue of PDN for others will be shelved until early 2006.

Another victory! For now. If — when — the issue arises again, we will be back on the front lines fighting, because the livelihood of our family depends on it.

ALS may have weakened my body, but it hasn’t weakened my resolve to survive. I will fight for as long as it takes!

Editor’s Note: Tennessee is one of several states that have curtailed or restructured Medicaid benefits due to rising costs. Many others are considering cutbacks. A proposed $10 billion reduction in federal Medicaid funds, scheduled for a vote in Congress this fall, has been put on hold due to the unknown effects of Hurricane Katrina on the Medicaid program.

Worsham, a freelance computer artist who lives in Nashville, Tenn., received her ALS diagnosis in 1994.